Grandma on the picket line, fighting for workers’ rights. I’m so proud of the work she did and forever grateful for helping me my whole life.

Well I’m taking some time with my quiet friend
Well I’m takin’ some time on my own.
Well I’m makin’ some plans for my getaway
There’ll be blue skies shining up above
When I’m cloud hidden
Cloud hidden
Whereabouts unknown

Late on the night of January 8th, Grandma’s tenacious grip on life finally let go — not with a sudden fall or illness, but peacefully in her sleep, which was how I always hoped she’d go.

I started this blog to offer a slightly different perspective on caregiving, but it turned into much more than that. My daughters learned about their family. Other caregivers thanked me for making them laugh. And I found an outlet for the confusion, frustration and flat-out bewilderment that comes with taking care of an elderly person. Even one you dearly love.

When Grandma died, she was a mere shadow of her former self. I would much rather remember her as the sassy labor leader who stood up for what’s right and knew how to hobnob with politicians to get what she wanted. Millions of full-time employees have people like my Grandma to thank for their time off, their health care and retirement benefits — even their weekends. Because unions didn’t just help their members; they improved working conditions for everyone by promoting the audacious view that people shouldn’t literally be worked to death. But I digress.

I can’t end this blog without thanking Brookdale Hospice for the excellent care they took of Grandma. As her dementia progressed and her contact with the outside world grew rare, the aides, nurses, social workers and chaplains who visited Margaret and listened to her stories were the highlight of her day. They helped me make informed choices and offered suggestions when I started looking for residential care. In the end it wasn’t necessary to move Grandma to an assisted living facility, but just having people to talk to about it made the journey less overwhelming for me.

Sometime during the final days of Grandma’s life — when I was checking on her through the night, changing her, and administering pain meds — it dawned on me that it was almost the tenth anniversary of my Grandpa’s death. I literally picked up where he left off, which means I cared for Grandma in some capacity for 10 years. That’s 20 percent of my life. I try to remember that when I feel guilty for the times I was short with her or even outright mean. One of my friends commented on social media that I’d been a loving granddaughter. I admitted that wasn’t always true, but I can say Grandma had everything she needed and wanted during the twilight of her life. Just before she died I bent down one day and kissed her head and told her I loved her. “You’re a nice lady,” she said. Wherever she is now, I hope she knows I did my best.

Ever feel like you’re stuck in a Cheech & Chong/Groundhog Day mashup? I do.

I grew up listening to my parents’ 8-track tapes. My Mom regularly played everything from Jesus Christ Superstar to Doctor Hook & the Medicine Show at maximum volume, especially when she was cleaning house. One tape in particular stood out to me because it wasn’t music. Maybe it’s my imagination, but whenever my parents listened to Cheech & Chong’s self-titled first album, they seemed to always go straight to the track titled “Dave.”

If you’ve never heard the routine, there’s a guy named Dave trying to deliver drugs to someone’s apartment, but the guy inside is too high to understand what’s going on. I suppose because drug humor was pretty new at the time my parents acted like this was the most hilarious thing they’d ever heard. I guess you had to be there.

You’re probably asking yourself what any of this has to do with caring for Grandma. Well, as I said I heard this tape a lot growing up, and recently it dawned on me that one of my recurring conversations with Grandma is a lot like that infamous routine. I’m Dave, and Grandma is that guy who won’t open the door. It goes something like this:

“Grandma, what did you do with your lunch?” I ask.

“Well I ate it!” she replies.

“You couldn’t have eaten all of it because there was chicken. Where are the bones?” I ask.

“I don’t know anything about any bones,” she insists. “Maybe those people who were down here took them.”

At this point I know she’s either a) hidden her leftovers or b) thrown them in the trash, which I’ve asked her about a million times not to do because it attracts bugs.

I ask again. “The hospice people didn’t take your leftovers. What did you do with the stuff you didn’t eat in your lunch?”

“I didn’t have lunch.” she replies. “You mean supper?”

“For the love of god whatever you call it I brought you food and I want to know where the stuff you didn’t eat went,” I say, hurriedly slamming drawers closed and lifting chair seats with hidden compartments underneath in search of the missing chicken bones. Eventually I notice something that looks like food in her trash can.

“Why can’t you just leave your plate on the table?” I ask. “I don’t want you to put food in the trash because I don’t take it out every day.”

“Well they told me not to put stuff in there,” she replies. “So I don’t.”

“But your lunch is in there. So you do.” I reply.

“Well I was just trying to help,” she says.

“It’s not helping me when I have to play guess where you hid your food!” I yell, drowning out that voice in my head telling me to cut this conversation short and walk away.

“So I should leave my supper on the table?” she asks.

“Yes. Just like we’ve discussed a million times. I will take care of the leftovers.” I say.

“So let me get this. I leave my plate on the table when I’m done?” she repeats.

“Yes,” I mutter, even though I know the next time I come down to collect her dishes we’ll go through the same routine. That’s dementia: Amazing details from 50 years ago are as plain as day, but neither repetition nor recent reminders make anything new stick.

As I empty her trash and collect the dishes to go back upstairs, I wish my Mom were still alive. She’d get it when I told her I know how it feels to be Dave.

“Uh-oh,” I said, every crazy story I’ve heard over the last eight years racing through my head.

“No it wasn’t bad,” Clark said. “I asked Margaret what was the greatest gift she’d given in her life. She told me when she was young her mother sometimes took in boarders. When she did, Margaret had to give up her room and sleep on the floor on a spot near the stove. At first her answer didn’t make sense. But when she explained that giving up her room was her gift to her mother, I understood how her answer fit my question.”

“Wow. I thought I knew everything about Grandma. But I’ve never heard that story,” I said, both surprised and relieved. Grandma’s filters disappeared a long time ago, so I was grateful she didn’t decide to share anything about her favorite topic, which is basically anything to do with her bowels. Rationally I know I’m not responsible for what comes out of her mouth, but if you’ve ever had a child blurt out something inappropriate in front of family, friends or even complete strangers, you understand the cringe of vicarious embarrassment.

Clark went on his way, but their conversation prompted me to think how I would’ve answered that question for her. From cars to tuition assistance to houses to live in, Grandma has given four generations of her family the support they needed when it mattered most. When I was young she and Grandpa bought a house for her widowed mother, my Mother and me to live in. When my Mother needed a bigger house for her growing family, they helped her out on housing again.

When I moved back from England after my plans to live there fell through, they bought me a car to get back and forth to work. When I found myself with a new baby and a year left of college, she and Grandpa bought my husband and I a house so I could focus on school rather than paying the rent. And when a nasty divorce left me reeling financially, she came through again, providing the down payment for the house that allowed me to finish raising my daughters in a neighborhood rather than an apartment complex.

My Grandpa provided the sweat equity that helped make those modest houses homes, but it was Grandma who provided the capital. From her humble beginnings on an Eskridge, Kansas farm, she went on to a successful career at Southwestern Bell. Between their two salaries and spendthrift ways, Grandma and Grandpa managed to provide for their own retirement and still help their family again and again. I help my own children whenever I can, but the modest gifts I’m able to give them pale in comparison to the ones Grandma gave me.

Of course not all Grandma’s gifts have been tangible. She’s taught me dozens of life lessons my Mother was unable or unwilling to teach. She married the man who became the best grandfather a girl could ever hope for. And she played the role of grandmother to every one of my girls, none of whom remember my Mother. The girls had other grandparents, but some of them were far away in England. They might not realize it now, but someday they’ll look back fondly on the years they lived with their great-grandmother. Despite the chaos and craziness, her presence in our household will give them a lifetime of memories and hopefully some insight into what being a family truly means.

Cute and cuddly, old and wrinkly. Appearance aside, these two people are nothing alike.

Ten thousand hours. That’s supposedly the amount of time you have to spend at something to master it.

I’d never claim to be a caregiving master, but even if I’ve only spent 16 percent of my time over the last eight years taking care of Grandma, I’ve racked up enough hours to know something. So to all of you who think caring for old people is like taking care of children, I’m here to say unequivocally that the two are nothing alike.

These are a few of my observations:

Childhood is finite — old age can go on indefinitely

It seems like yesterday my youngest daughter was that little swinging cherub. Now she’s a high school graduate and soon-to-be college student who’s taking a giant leap toward adulthood. I’ll continue to support her in every way I can just as I do my adult daughters, but she’ll no longer be a day-to-day responsibility. I have a lot of life left to live, but when I contemplate my future, there’s always a giant question mark hanging over me: How long will Grandma live? Considering her caregivers’ vague predictions, I might as well ask my Magic 8 Ball …

Children learn new skills — old people forget theirs

Shoe tying. Handwriting. Reading. It’s amazing to watch children acquire the skills adults take for granted. And it’s just as disheartening to realize Grandma no longer knows how to change a lightbulb or ask for a paper towel by name. Her hospice nurse says dementia may eventually rob her of her ability to feed herself. The subject of knowing which tasks she’s genuinely forgotten and which ones she just prefers not to do warrants an entire post.

Children accept parental authority — old people resent being told what to do

Of course children don’t always accept their parents’ directives, but as a mother of three I can say for the most part, they do. Grandma, on the other hand, fights me every step of the way. Whether I insist on organizing her food, giving her baths, or removing her shoes in bed, she always has an excuse for why she does it her way. You can’t put an 89-year-old dementia patient on time out, and reasoning with her is an exercise in futility. So I choose my battles, accept help from hospice, and check her hiding places when the pantry shelves mysteriously empty overnight.

Children grow more self sufficient — old people grow more helpless

Along with the new skills they acquire, children also typically grow taller, stronger and faster. At the other end of the spectrum, everything’s getting harder for Grandma. Shelves are higher. Room light is dimmer. Sometimes it seems as if her own personal gravitational field is pinning her to the bed and preventing her from standing up.

Children are flexible — old people hate change

Children don’t have much choice when it comes to accepting change. Their bodies grow, they advance in school, and each subsequent grade provides opportunities to play new sports, meet new friends and acquire new knowledge. Grandma eschews change with a passion. Whether it’s fear or stubbornness or plain old inertia, something compels her to wear clothes from the 60s, eat food from the 70s and reminisce about events that happened so long ago nobody else is alive to corroborate her accounts. Every time I find myself favoring the old and comfortable, I intentionally mix things up to immunize myself from the dreaded fate of being too set in my ways.

Despite their differences, I’ve come to realize there’s one major similarity between the very young and the extremely old: they both need the safety net that a loving family or a supportive community provides. And since I’m growing older along with everyone else, it’s not just altruism that fuels my hope for better eldercare options in the future. After all, there may not be a cranky but devoted granddaughter to prevent me from falling through the cracks.

Nobody knows what the future holds. But for now, hospice is making life infinitely better for Grandma and me.

More than once this year, Grandma has mentioned how lonely she is. She’s lost the ability to read or write emails; even the phone confuses her now. When friends send her a card and I read it to her, she has no idea who sent it.

Now that I work from home to care for Grandma, I feel sort of isolated too. More than once I’ve tallied my daily conversations and discovered I talked to more cats than people. Of course I can walk or drive anywhere I want. But during the work week my best bet is starting a conversation with the Meals on Wheels delivery guy. I know if I bring up KU basketball I can corner him for at least a few minutes.

Luckily for Grandma and me, I finally made progress in my search for caregiving assistance. Because she has a qualifying diagnosis (in her case congestive heart failure with a really long technical medical name I can’t remember), Grandma is eligible for hospice care. With weekly visits from a nurse and a bath aid — plus regular stop-ins from a social worker and clergywoman, Grandma has visitors to look forward to. And even if they’re not here every day, I no longer feel like I’m bearing this burden alone.

Prior to this, my only experience with hospice was when Grandpa died. There was a hospice house in Topeka, and he went there a few weeks before his death. They kept him as comfortable as they could and were very accommodating about visitors at all hours. They couldn’t save his life, but they helped make his final days bearable.

This time around is much different. As I mentioned the hospice employees come to us, which has reduced the number of doctor visits I have to arrange. They provided a hospital bed that we managed to convince Grandma to start sleeping in instead of the ratty old recliner she’s had for years. Her bath aid gives her weekly showers so I no longer have to cajole her into bathing. The nurse even gets her prescriptions delivered. These things may seem trivial, but when you combine them they have made life much easier for me and more pleasant for Grandma too.

Of course my first thought when I realized how great home-based hospice is was that it couldn’t last. The news is deluged with scare stories of Medicare cuts and death panels, so you wouldn’t think something as wonderful as hospice could ever dodge the funding axe. But so far it has. And because Grandma’s diagnosis is for a chronic condition, she’ll be eligible for help for the remainder of her life. I resisted the urge to hug the nurse when she told me this, but only just.

Hospice cannot stop Grandma’s downward dementia spiral. Hiding leftovers in the filing cabinet … stories of being trapped in a non-existent crawl space … accusing me of feeding her table scraps … these are just a few recent highlights of her current mental state. Likewise, hospice cannot reverse Grandma’s heart failure. Her heart is slowly but surely wearing out.

But hospice has reduced the need to take her out of the house, which is a big plus during flu season. And they provide companionship from people who haven’t heard her stories a million times. Most importantly, they enable me to keep her at home a little longer, which is where she wants to be. Here’s hoping I can continue to manage her care with hospice’s help — and that Medicare continues to provide this invaluable albeit somewhat obscure benefit.

Is there junk in my life? Oh hell yes! I have a basement full of old, broken, unused crap. But guess what? It’s not mine.

I suppose the ethical question is do I let it keep gathering dust until Grandma passes? Or do I start getting rid of stuff now? Her advancing dementia and the countdown to my daughter’s May high school graduation have convinced me to tackle the problem now. There are boxes Grandma insisted she had to have that I moved up here only to remain taped up seven years later; there’s an entire room she never goes in. You can’t miss something you don’t know you have, but you can tackle getting an entire house in shape for a pending move in phases. I christen phase one Jettisoning Grandma’s Junk.

The ceramic owl lamp that weighs at least 30 pounds and flickers so excessively Grandma insisted it be unplugged before it started a fire: Gone.

The two enormous antique bookshelves full of dusty old westerns and romances that were probably read sometime in the ’70s: Outta here.

The nine unopened mystery boxes that could contain some priceless family heirlooms but in reality only hold more bizarre junk that Grandma couldn’t part with but has no practical purpose: Adios.

If I’m honest with myself, I know it’s not only Grandma who has junk lying around. When I moved here after my divorce seven years ago, I vowed to stay downsized. But little by little, crap snuck in. I have an office full of desks and computers my children and I abandoned for laptops at the kitchen table. I have electronics that are probably worth something on Craig’s List, but the thought of shady people calling me looking for components for their “projects” kind of creeps me out. I have a living room full of furniture we sit on approximately 3 times a year.

I read the other day the floating island of trash in the Pacific Ocean is now twice the size of France. Facts like that make me reaffirm my pledge to live simply. But what do I do with the junk I already have? Maybe I’ll haul it around for another 40 years and let my kids sort it out. Nah, seeing Grandma to the finish line has made me aware of many things, but most important among them is do what you can to minimize the burden you put on your family. My kids might not be as accommodating as me. 🙂

Prince Charles and I have a lot in common. We’re both waiting to take the reigns of our family dynasties. Oh sure, my responsibilities are smaller scale, but I don’t have a palace full of help either.

This is a just an example of my to-do list:

Laying the Queen Grandma to rest

There won’t be any foreign dignitaries and it won’t be televised, but I will be in charge of Grandma’s funeral. Her friends should have an opportunity to pay their last respects, but she’s already outlived most of them. If nothing else I’ll make green bean casserole (Grandma’s favorite dish) and we’ll play Stairway to Heaven full blast for as long as it takes to drink several bottles of Sauvignon Blanc.

Perfecting my wave

Kansas folks are friendly! Although we’re more likely to nod than wave to people we pass on the road. That’s probably because none of those old country trucks had power steering back in the day. Well we have modern cars now so it’s time we updated that.

Proclaiming official gathering places

Wherever the royal family vacations, a flag is raised at the castle. I assume the matriarch makes the call on where this will be. We will keep our festivities on the down low to avoid the paparazzi, but I will insist on the MU flag coming down whenever we meet at my oldest daughter’s house. Only the KU Jayhawk may announce our presence.

Preserving my family’s collective knowledge

There are entire museum wings devoted to Charles’ lineage, blood lines, etc. My Mom only filled in a few names in the illustrated family tree in my baby book. If I don’t do a good job, my grandchildren will never know about their great-great cross-dressing Grandpa and other colorful characters in our family’s history. I guess this blog is a good start. Thank god I’m writing it when I’m young enough future generations won’t doubt my sanity.

Ensuring my legacy

This is a tough one — how do I want future generations to remember me? I’m average height so Samantha Longshanks is out … For the time being I’m mentally stable so Mad Sam won’t work either. I still have some time to work on this one. If I depart unexpectedly I guess there are worse things to be remembered for than a plethora of cats and the awesomest music collection any woman ever amassed. Rock Goddess Samantha. I kinda like the sound of that.